Patients' experiences when afflicted by takotsubo syndrome - is it time for guidelines?

Takotsubo syndrome (TTS) is an acute and reversible type of heart failure that shares common features with acute coronary syndrome. It is usually caused by psychological or physical stress, but for a third, triggers cannot be identified. Patients also suffer from residual symptoms and decreased mental health in the recovery phase and may struggle to comprehend and manage everyday living.

To describe patients' experiences when afflicted by takotsubo syndrome, after discharge from hospital.

An inductive explorative design using a qualitative approach with semi-structured individual interviews. The text was analysed using qualitative content analysis according to Graneheim and Lundman.

Ten women and one man afflicted by TTS were interviewed two to twelve months after discharge. Six sub-categories were identified, and a main category emerged: The process from symptom onset and understanding to increased awareness and changes in life. The patients suffered from emotional reactions and they sought answers and understanding about the underlying causes. The disease led to changes in patients' daily lives as they were affected physically and psychologically. Spouses and/or bystanders had a positive supporting role, but the patients desired more support from the healthcare professionals such as an earlier appointment for follow-up with a nurse.

Being afflicted by TTS can lead to changes in life conditions but these changes vary among patients. Becoming ill was associated to acute physical stress and prolonged psychological stress and they suffered from emotional reactions. The follow-up care needs to improve as the patients need more guidance from healthcare professionals and earlier appointment for follow-up with a nurse. A structured and multiprofessional treatment with a person-centred approach could support patients in their recovery.